No Two People With Migraine Are the Same

I did not believe I had migraine for several years after I was diagnosed in 2002. Although the specialist I saw was highly respected, I didn’t trust the diagnosis. I knew what migraine looked like because my husband has it. My symptoms were nothing like his.

Here’s what I believed about migraine in 2002:

It causes a visual aura, where people get spots and squiggly lines in their vision

OTC meds, particularly ibuprofen, could usually bring the pain down a couple notches

These lists don’t look like they could describe the same illness.

Only with a lot of reading and researching did I discover that migraine symptoms span a wide range. A handful of symptoms are known to be so common that they are used for diagnosis, but even then a person only has to have a portion of those symptoms.

My husband and I have two different migraine diagnoses, migraine with aura and migraine without aura. It’s possible to have migraine without pain and an aura without headache. Other types of migraine include hemiplegic migraine, basilar migraine (now known as migraine with brainstem aura), retinal migraine, abdominal migraine, cyclical vomiting syndrome, and benign paroxysmal vertigo. All these classifications contain variations within them. For example, it’s possible to have migraine with aura that diverges from what my husband experiences. And not everyone who has migraine without aura has the same symptoms as I do.

That’s just diagnosis. Symptoms run the gamut including many that people find hard to believe are migraine symptoms. Response to treatment is also varied. It’s common for a treatment that only helps 10% of people to be considered effective.

If you were to find two people with the exact same diagnosis, symptoms, and response to treatment, they would not experience migraine the same way. Support systems, access to health care providers, insurance, financial resources, coping strategies, and resilience all factor into how migraine affects individual people and their lives.

Even with the same basic diagnosis, we all look so different. OTC meds provide relief to some but are useless to others. Some can function at least partially during an attack while others are confined to bed. Some have screaming pain while others have moderate pain. Some can read or be on the computer during an attack and others have to avoid all light. Some have food triggers, some don’t. And so on.

Clinicians and researchers have begun to embrace the idea that “migraine” is a gigantic umbrella term. It encompasses many divergent manifestations of related, but distinct illnesses. Migraine isn’t a chain restaurant, it’s more like a series of sister restaurants—all owned by the same people, but with different menus and décor.

Knowing these differences can give us more empathy for those whose migraine attacks don’t look like ours. They can also give us more compassion for ourselves. I always knew my husband’s migraine attacks were serious and temporarily disabling. Yet I would beat myself up every time I missed work because of a “bad headache.”

Both my symptoms and my husband’s have changed over the years. His attack severity has decreased even without medication. I have been disabled by severe chronic migraine. Various treatments have made my attacks less painful, but it has not lessened their frequency. I currently have at least two attacks a day.

I can’t believe I once thought my husband had “real” migraine and I was just a wimp who couldn’t handle a headache.

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Comments

This blog hits my main concern around misconceptions of migraine. It can manifest numerous forms including vertigo, stroke symptoms, aura, and, predominately, headache. I don’t get headaches but the vertigo can be debilitating. I know a few others who manifest other symptoms.

About 8 or 9 years ago Scientific American published a summary of migraine research. A main observation is that a functional MRI, obtained during a migraine, exhibits a pattern of activity (cell depolarization) advancing across the brain brain’s surface. The article also summarizes several erroneous concepts around migraine including the error of believing that circulatory system response governs migraine. The article notes that some successful medications were developed around inaccurate conceptions of the migraine process. (It’s a case of being lucky but not right. In the long run “right” will likely yield more effective medications.)

Due to the wide variation of migraine, it seems likely that functional MRI’s obtained during migraine would be the gold standard; however, neither insurers or the national budget could afford it. The best help for us would be an organization is a strong advocate for research. I have yet to find a suitable one.

I have a newer symptom after 30 years of migraines. I feel like gravity is at 200%. Like the earth is pulling me to it. It takes twice as much muscle effort to get out of bed or move my legs to walk. Anyone had that before? Does it mean something else could be going on?

This reminds me of my older sister. She has been on blood pressure meds for a long time. A few years ago I tried to point out to her that some of her “off” days sounded like migraine symptoms. Her response “I haven’t had migraine headaches in 20 years!” So 3 years ago she told me about going into the house from a bright sunny day and the windows did a 20 minute kaleidoscope dance so she went to the doctor. After an MRI the doctor asked if she had migraines. She gave the 20 years response. He diagnosed her with “silent” migraine. She has had several surgeries since then and unfortunately the anesthesia brain lets her forget that diagnosis even though in the hospital and rehab certain scents really affected her. I wonder if all these BP meds she takes act as preventatives since that is one class of med that is used that way.

I talk about this ALL THE TIME, especially when friends or family dismiss their own migraines because they feel like their episodes aren’t as bad or serious as mine. Thank you so much for this article!

My story is sort of the opposite. I’ve dealt with migraine since I was a child (though I was not diagnosed with migraine as a child, I was a “hypochondriac”). Over the last few years my husband has had, what I recognize to be, a handful of migraine attacks. The first time he thought he was having a stroke and nearly had me call an ambulance. After he’d recovered and I told him he may have had a migraine he recoiled, left the room abruptly ending the conversation. It was as if I’d suggested he was guilty of some immoral act and an uncomfortable window into his opinion of migraine sufferers. More recently he just quietly disagrees with the suggestion and yet has no problem asking for some of my medication.

Oh, goodness. Maybe through your gentle support your husband will eventually be able to talk more open with you or his healthcare provider about what’s going on with him. I have some family members and close friends who sure do fit the migraine profile but deny it any time I try to bring it up and talk to them about needing to discuss it with their doctors.

I would be remiss if I didn’t mention (as a migraine.com moderator) that sharing prescription medication can be very dangerous, so if those are the types of drugs he’s asking to use, he needs to get his own prescription in order to protect his health.

Fingers crossed you’re both feeling good today. Thanks so much for your feedback, and thanks for taking care of someone who might not be ready to talk about what might be going on with him.

I can’t believe I once thought my husband had “real” migraine and I was just a wimp who couldn’t handle a headache…or I AM NOT A WIMP!

The most difficult habit of mind that makes my life a challenge is a deep seated belief that I should be able to do anything to which I “set my mind”. Determination can be a virtue (along with a flexible mind)..but… the determination to override my condition is often not a virtue at all.

Transforming the goal for my determination, creativity, & emotional intelligence into acceptance of what is truly happening and respecting that… has come only with time. How often I have said out loud..I am a wimp! only to have to remind myself….I am NOT a wimp!

The hardest part of going to see medical (or alternative) doctors has been the reality that my symptoms have changed between consultations. My fear is that those who are supposed to help me will judge me as a hypochondriac or worse. Psychiatry doesn’t have a clear category to take Migraine into account…at least very few know enough about it to do so skillfully.

So I felt vulnerable every time I had to show up to an appointment with a new set of symptoms. What a relief to know I was not making it up! This website has helped get me through those times of self doubt.

I am so grateful that the professionals in the Headache community are now sorting this out and are working to inform those health professionals who are not quite up to date. Thankfully, for the most part, I have been lucky to find kind and compassionate specialists who do know what there is to be known.

But I know some specialists are being underpaid or are not being hired to provide the highest quality of care for Headache patients. The current compensation by insurance does not permit hour long consultations…which seem necessary for deep listening to and understanding of this condition in practice. Private Neurology clinics seem not willing to support less lucrative practitioners. Sad.

So a big thank you to all who are working to help us live with Migraine.

Thanks so much for these thoughtful comments, bluebird. I can echo what you said yourself so well: you are *not* a wimp! I think you’re a good model of someone who is standing up for herself in life and at doctor appointments. I have definitely been where you described, and I’m sure I will be again–feeling scared that I won’t have enough time to talk to my doctor, that he/she will think I’m a hypochondriac, that maybe I’m spending the appointment talking about things that may have nothing to do with migraine, etc.

I hope you’re feeling good today, and thanks for the kind words about migraine.com.